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I had a very interesting conversation yesterday afternoon with a lady from the council. She works within the Educational Psychology team but was given my message because no-one in the Social Care department was available, or perhaps they just had no clue as to what to say to me (I assume) and were hiding under their desks.

She has recently worked with Jude within his school, recording him in various settings so we and his direct teaching staff could evaluate behaviour and see how we could progress in terms of management and encouraging development. Also, the recording is great to see all the positives on screen as you so often miss that little smile or happy glance up at the teacher he so adores.

Anyway, I explained that I was told by my non-Social Worker how I would be transferred to the relevant team in order to create new professional links and that with these links, I would be able to find out who our actual Social Worker is. This lady was as confused as me and literally had no idea why I had been told this information. She looked on the system (!) and it apparently details that the non-Social Worker finished his episode with us in April however there is the name of a Manager within the Social Care department outlined within Jude’s care team…seriously, stop falling asleep. This is only going to get clearer.

So within Jude’s support team, we have the lady I was talking to (Educational Psychologist) and a Manager I have never spoken with or met and who has never met Jude. No-one else as far as I’m aware.

Is it just me, or is this a bit ridiculous?

I know Jude was turned down for literally every type of therapy going because “he can already walk” (physio), “his concentration is too poor” (Occupational Therapy), “he isn’t priority” (music therapy) But COME ON, how hard does this need to be??

So let’s start at the beginning of our Council saga…back in December, I requested an assessment for Jude as I knew it would benefit him massively to have a Social Worker and that hopefully we could access some extra facilities. Fast forward through a few months of me hassling the Social Care department we eventually had our assessment in April. It took another month to get the report through that basically said we aren’t entitled to anything I want but we could have forty hours a YEAR to use however we want in terms of one to one support, clubs, etc.

Maybe I’m particularly stupid but I still have trouble understanding where and with whom we can use our hours. I’ve made the assumption…and so far it appears to be correct…that the hours can be used with most charities and within settings organised through the council. No idea where else.

I then requested an increase in hours and our non-Social Worker managed to increase them from forty to ninety five hours a year by going through panel (another enigma within the council. I have a view of three or four people in suits, literally sitting at a panel table discussing whether my child or the next child is worthy of getting any additional support, even though they have never met them, the family or anyone involved in the child.)

So here we are, eight months on from my initial request and we STILL. HAVE. NO. SOCIAL. WORKER!

Maybe we don’t actually need a Social Worker – did I imagine someone telling me it would help? Or did they actually say, it would help but it’s a complete impossibility.

I have the manager’s email address so have written to her tonight asking for an ounce of clarity. Let’s start taking bets on how long it will take her to reply and how many times I will have to send email prompts.

The Educational Psychologist was really lovely on the phone and said she understands my concerns and because my exasperation was pretty evident, I was given the names of a few people to ask for on the phone if the manager is unable to help me. Honestly, how hard does this need to be?

If I find this difficult, I feel utterly dejected for all those people who are unable to hassle the council like I am, or who aren’t able to be such a bitch on the phone as I am, when necessary. The Social Care department is meant to be there to help us but so far, over the last few weeks I have failed to navigate their telephone line obstacle course to get through to anyone at all. And because of the complexities of their insanely detailed network of individuals, teams, departments and panels, I am just as confused as I was back in December regarding what we can do for Jude. How depressing.

In an attempt to placate this rather negative post (sorry guys), here are the three members of our family that I spent most of the day with. Patty the box loving cat, Stups who is obsessed with feathers and our beautiful Emmeline.

I thought it would be interesting to look at how life differs in terms of day to day activities with Jude away for the week. I know there is the immediate and obviously impacting difference that I have gone from three down to one child but already, I have seen differences in how we live.

Firstly, this morning I was able to have a shower!!! Sounds ridiculous but when I get up normally, it’s 100mph from the moment my eyes open. With no Jude around, I was able to have a shower and actually get myself ready for the day. I even put some make up on! Secondly, breakfast…I made our food and we sat down together at Emmeline’s little table to eat, it was so lovely to be able to sit down for once for my breakfast and socialise with her (as much as you can with a one year old!) at a leisurely pace. I normally eat spoonfuls of left over porridge from the cooking pot as I fleet from the kitchen to the living room, to the kitchen, to Jude’s bedroom, to the front room, to the kitchen, etc. I wonder how many miles I walk a day!

I can actually feel my heart beating at a slower pace as I sit here and write this blog in the middle of the day (not possible normally). I do not feel stressed or anxious which is something I have been experiencing more frequently of recent – bit of a worry. We are able to act sporadically and choose to do things on the spur of the moment. Anything. Literally. We can do whatever we want and not have that slight feeling of dread that it’s not Jude-friendly or that he might have a hissy fit so we have to leave early or split up as a group so one can take him home again. Life is just more relaxed and easy.

Here was my beautiful view at lunchtime (again, sitting down to eat!)

But easy is boring, right? Despite Jude being a complete pain in the butt, I actually miss him. I miss the chaos and craziness he brings wherever he goes and genuinely I miss his funny behaviour in public because the older I get, the more amusing I find it watching other people’s reaction to his random questions…”what are you doing?” and “are you going home yet?” are two of his current favourites.

Something I reflected about earlier, is the notion of teaching boundaries to a child with learning disabilities. I have no idea why this came to mind but it’s something I have thought about quite a lot, especially today. Jude has a very limited understanding of boundaries in terms of what they consist of or even what the idea of boundaries means. Boundaries are instilled in us at a very early age, sometimes without us even realising it’s happening…we’re taught personal boundaries, relationship boundaries, behavioural boundaries, social boundaries, etc. Jude struggles with the whole lot. He has very little comprehension of personal space and sometimes stands really close to people, he has no idea of social boundaries and constantly interrupts speech, ignores people, wanders off mid-conversation, he can’t share ANYTHING to save his life.

It’s something I worry about a great deal actually. Once when I was abroad visiting a family friend, we were in a shopping centre and this man got in a lift with us and stood sooooo close to another guy. This guy got quite angry and literally pushed the first man away and it was then that my friend realised he was disabled and probably didn’t know he was doing anything wrong. We intervened and helped the man find the floor he needed (even thought he was fine on his own, we just wanted to make sure he was safely away from the other man who hadn’t even twigged there was something awry.) Anyway, what if this happens to Jude one day and someone hurts him? It’s not unheard of. Will Jude even be able to go out independently on a shopping trip? In some ways I kind of hope not.

So I’ve been looking up articles about boundaries and teaching them to learning disabled children. I read one support guide that gives useful suggestions such as when teaching about personal space, encourage your child to hold their arms out aeroplane style and spin round whilst explaining that this is how much space people need.

A surprisingly useful link I found…and I have no idea how I ended up here in the first place, is the Supernally website (stop laughing) http://www.supernanny.co.uk/Advice/-/Health-and-Development/-/Special-Needs/Behaviour-and-Discipline-issues-for-children-with-Autistic-Spectrum-Disorders.aspx

On this page, she offers multiple coping mechanism, broken down into differing areas of behaviour.

Here are her suggestions for when out in public:

Give your child headphones so they can shut out the confusing sounds around them.

Prepare a timetable or map for the shopping trip with a shopping list to complete. For example, “At 4pm we will go shopping, and we are buying crisps and fruit” and so on. The map of the shopping aisles will help your child know what to expect, and once the shopping list is complete, this will indicate that the shopping trip is finished (don’t forget to add going to the checkout and going home to the timetable!).

Give your child a task to complete during the trip, using visual symbols to guide them. For example, they could be in charge of buying the bananas and oranges.

I really like this list and am tempted to draw Jude a little timetable for the next time we’re out. He will find this fun and it could stop any possible meltdowns before they even occur. BUT there are flaws…I’m pretty sure I will NEVER have time to invent tasks for Jude to complete whilst we’re out. I just about have the organisational skills to put shoes on the baby and make sure I have my purse, three children and a buggy.

When talking about behaviour difficulties, the author states that “Traditional discipline will not work for a child with an ASD*. Children with an ASD are unable to understand the consequences of their actions, so punishment is likely to make behaviour worse and cause more distress for both parent and child.”

*ASD = Autism Spectrum Disorder

This is interesting and something I know deep down but have never fully appreciated. Jude doesn’t understand anything. Jude doesn’t understand why I get cross when he throws wrappers on the floor or leaves clothes all over his bedroom. He has a habit of stuffing things under his bed when he no longer wants them near him and doesn’t understand why I get mad when I find these items, normally they are week old pants or socks festering in a pile amongst his shoes and random bits of paper.

Does anyone have any interesting stories of teaching boundaries? I admit this is (another) thing I struggle with, the fact that Jude behaves so carefree and without limits. I know, when put this way, it could be construed as a good thing. Shouldn’t we all be boundless and free from concern of what others think? Yes and no. This is another discussion entirely but I’d love to hear any stories, advice or comments about boundaries and special needs children that you may have.

I’m going to get on my political high horse for a minute so stay with me and I promise it won’t last long…

Rio. The Olympics.

I absolutely adore the Olympics, always have done and I always will. I love sport and any excuse to sit and watch two weeks of a range of sports we don’t often see, to me is heaven. BUT, Rio. Why Rio? Brazil has sooooo many social and political problems so why have they been given the honour of hosting the Olympics? How come they can pump a load of money into this event yet can’t get all the three year olds sleeping on the streets into safe houses with caring families, clothes on their poor, little terrified bodies and regular food in their mouths. Don’t get me wrong, Brazil is beautiful and a place I have always looked at in some awe and wonder however, this view is entirely based on reputation rather than my own witnessed reality. I was doing a bit of reading up on Brazil and here are the scary facts I found:

The poorest 10% of the population only earn 1% of the national income. The richest 10% within Brazil have access to more than 40% of the income.

Municipalities organise and finance local schools as well as general education for the children in their area so the richest parts generally offer a better education; the equipment and amenities vary wildly between the two extremes in living standards so therefore richer children are more likely to succeed at school and leave with good exam results. Sadly, the poorest population often miss school altogether because of malnutrition meaning they fail to develop intellectually or have any ability to adjust to the social setting of a school. Families on low income often encourage children to regularly miss school to help contribute to the family income and despite it being illegal to employ children under the age of 16, it isn’t uncommon for those as young as ten to feature in the work place.

Infant mortality rates in Brazil are terrible, relating directly to sanitation problems as well as education and financial levels of the family…

I could go on, but I won’t. I promised I wouldn’t. I cannot wait to watch all the events but it’s just so sad how polarised the wealth is in this country and that the Games will carry on as if nothing is wrong. I know they can’t put a downer on something so wonderful and it’s great to have positivity within a country like Brazil however, it just bothers me so much what goes on over there.

So Jude today…

I feel like I haven’t seen him today which I suppose you can take as both good and bad. He was in a really strange mood this morning and it’s all because he knew we had things coming up today and he’s terrible at waiting for events. I think it’s Jude’s anxiety manifesting again. It’s as if he literally can’t wait for whatever it is we’re doing later on and will ask me what feels like millions of times when we’re doing it. So for example, a while ago I promised to take the children to the Waffle House for lunch and because we got so sick of Jude asking when it was time to go, we ended up leaving at 11am. He was immediately content and went back to his usual self.

Today was one of those days. Jude knew he was going to his play scheme for a few hours and then coming home for dinner before his father collected him for his annual week with the children. This morning Jude repeated over and over again “I’m going to school (where the play scheme is held) then I’m coming home at 3 o clock, having dinner and going to daddy’s.”

“Yes Jude you are.” *repeat*

It’s as if he needs to clarify all the information in his brain before it happens in real life.

Before we left for his play scheme, he had a big tantrum in his room and I really cannot tell you what kicked it off because I’m sure it was nothing at all. But in true Jude style, literally five minutes later, it was as if nothing had happened and he was being chatty and sweet again. I normally make a concerted effort not to tell him when something big is going to happen at some point in the future as it just causes problems. Stupidly, I felt he has matured a lot recently so thought he could cope with this level of information but clearly I was wrong! I think Jude functions better when you say “right Jude we’re off out for lunch now” so he doesn’t have that time to dwell on it too much and inevitably freak out.

So, I’m going to miss Jude and Elsa hugely this week but it will be nice to have a bit of space to breathe for a week without Jude here. The summer holidays are challenging and long enough as it is but with a Jude, they’re a million times harder! Elsa was a little reluctant to go this evening but we have promised to speak on the phone every evening when she goes to bed so that will help us both.

So for the next week I have no fresh Jude material to write about but will instead reflect on things he has done or said in the past. I will also draw on journal and newspaper topics relating to disability that I have recently read.

To finish, here is Jude and Emmeline earlier this week playing the game she invented a few months ago that we fondly call “Pounce!” (you literally pounce on the bed)…they both had so much fun, it was wonderful to see.

Bought these today as Jude has already broken two out of the three that I bought with the Family Fund money…

See how long the rest of our new bits lasts!! These tubes are great fun, quite hypnotic to watch and actually Emmeline enjoys playing with them too. She especially loves Jude’s new bubble tube and always tries to get into Jude’s bedroom to watch it! I guess babies are drawn to colours and movement so perhaps I’ll invest in a few similar items for her as I know Jude won’t let the new toys leave his bedroom.

Interesting day…I called the social care team at Herts Council twice and found out that my (possible) Social Worker, or at least the person who can help me a bit better is away until next week. She’s going to call me Monday apparently…call me a pessimist but I’ll be AMAZED if I get a phone call even by Wednesday next week. Please prove me wrong Herts Council.

Jude went to Jubilee House for a while this afternoon, for the first time without Jade and he behaved a bit weirdly. I don’t know if it was in connection with Jade leaving or him thinking he was with his new Support Worker today but actually wasn’t. I told him he was seeing her (she’s called Lucy) however there was a last minute change because she wasn’t available which meant someone entirely different collected Jude and spent time with him at Jubilee House. It’s really odd because Jude can be quite unpredictable in terms of how he copes with change. Sometimes, it’s as if nothing has happened but other times it can send him crazy. Today unfortunately was the latter.

We’ve had a really cool summer holiday so far and I was beginning to think Jude was changing in terms of his behaviour, growing up and becoming more “normal” if that makes sense. He’s been talking with increased fluidity and not doing as many of his crazy things and sometimes (not often), I have seen glimmers of what he’d be like if he didn’t have a learning disability. I can’t even imagine him as an everyday ten year old boy. I know I have mentioned this before but there are several things I contemplate quite often – what would he like doing? How would his and Elsa’s relationship manifest in everyday life? Would he be shy or confident? I think I’m still mourning the loss of the child I never had. Life goes so quickly and when you’re presented with this new baby and he has the added complications that Jude offers, it’s as if you just wing each day as it comes. Ten years on from his birth and I still don’t feel I know what I’m doing. The girls are easier as they are able to vocalise what makes them happy or sad, even Emmeline. Jude regularly just says the first thing that comes to mind or whatever his answer was previously to the same question. The whole point of this waffling paragraph is that I thought Jude was changing but actually he hasn’t as much as I thought. He was difficult today, not as difficult as he has been in the past so I guess that’s something to hold on to however, I honestly felt he was moving into a whole new wonderful realm of positive being. I was able to treat him like the others, until today. He was in his own little world today, didn’t care for consequence or outcome. This is one of the things I find most challenging, he just doesn’t care about outcome, his entire motive is self-satisfaction. Is this a normal learning disabled trait? I suppose it is if you have a mental age way below that of your chronological years.

I don’t know if I’m just tired but I feel quite down about everything today. I’m not normally a negative person but I seem to have layer upon layer of stress building up on my shoulders and eventually something is going to give. I always think about the part in About a Boy where Hugh Grant says he’s an island. I can totally relate to this statement and often tell people I feel like an island! Hmmm which island should I be…

Despite the randomly emotional day, we went to the park this morning and had such a lovely time. Jude told Emmeline that she’s his best friend and that he’s proud of her and how well she can walk now. I love it when he comes out with things like this, it’s just so sweet.

Look at those adrenalin junky eyes she has on the roundabout. The faster we went, the louder she shrieked with excitement!!

The girls can only have a positive influence on Jude so I’m massively grateful to have them as his sisters. A x

Yesterday was a day that I think covered all of Jude’s behaviours, emotions and attitudes plus several (sadly) typical behaviours, emotions and attitudes from people around us.

First off, at the supermarket. Jude was being weird, not naughty or anything, just doing some of his odd stuff which I can see beyond but often grabs the attention of people around us. A lady was staring at Jude and as a consequence, her two children were looking as well. We were just choosing some fruit together, Jude was bobbing up and down on the spot and they were stood about 5 metres away watching us. I ignored them at first but after they moved on around the aisle but continued to stare, something snapped in my head. “Ignore them, ignore them,” my brain was saying however sadly, my mouth didn’t listen to my brain on this occasion. I know I should just continue with what I am doing and that the thoughts of strangers really means nothing to us but I struggle with this. It bothers me that one day Jude will realise people stare at him and I think the protective Mother Bear in me comes out to defend him at times. I wasn’t rude (I would have been a few years ago but manage to contain it now), I just held her stare and asked her what she was looking at. I think I stunned her into realising what she was actually doing as her response was to appear very flustered and promptly tell her children to “come on, we have lots to get still.”

So, do people not realise what they are doing? I’m pretty sure I’d make the conscious decision to openly gawking at people, it’s not really something you can do accidentally. Why do people think this is acceptable? And what was she thinking?

This is one of the reasons people with disabled children find every day activities such as going to the supermarket so stressful. Other people’s attitudes towards them. I’ve encountered some fantastic people in supermarkets so I don’t want you to think my view of general society towards Jude is entirely negative. I remember a lady at one supermarket checkout who let Jude come round and scan all the items because he was so fascinated in the beeping noise it made each time something passed in front of the machine. There was the time Jude kept putting food from the fruit and vegetable section into a ladies trolley (we were going at the same pace around each aisle so she was stuck with us!) but instead of getting annoyed, she instead embraced this crazy little (then) six year old boy and gave him objects to go and find for her. People like this make us feel part of society and I’m always truly grateful for their acceptance and civility.

The gawky stary ones make us (me) feel like freaks. That’s not a nice feeling and is one of the reasons parents of disabled children regularly avoid social interaction and thus experience ongoing isolation. Vicious circle. It’s the unknown of who you will meet when out and about.

Slightly worse than the starers are the ones who give you “advice” but thankfully for me (and subsequently them!) we did not meet today.

So when collecting Elsa from orchestra yesterday, Jude (unusually for him) wanted to get out of the car and come and wait for his sister with all the other parents/siblings. Cue a sudden rush of mum anxiety. There was a large group of parents waiting by the entrance and all the other siblings were either just standing still next to them or playing games with one another in the small entrance area. Jude chose neither of these options. Jude chose to talk. And talk and talk and talk…and typically for Jude, it was incredibly repetitive. “Whats for dinner mummy?” “Can we have pizza?” “Can I see granny?” “Where’s Elsa?”

Repeat each 30 times.

I could see people trying to sneak a glance at Jude as subtly as they could manage. I’m kind of over this sort of thing now, it still makes me feel like we’re in a spotlight on stage but after 10 years I’m more able to just carry on talking to Jude and pretend they aren’t there. I know they mean no harm and that it’s human nature to look at things that are a bit different but I hope that if they knew how it makes us feel, they’d not treat us like this and make us feel as if we’re aliens.

People just see the disability in Jude when we’re out and about. They don’t see the witty, fun side to him that he expresses only to those he trusts. For example, last night…in celebration of Emmeline going to sleep relatively quickly, we sat down to have an ice lolly together. Jude had a head start on me so when I came into the couch with my brand new lolly, he looked at it for a while and then said “Do you want to swap lollies mummy?” “Errr no thanks Jude” I replied so he laughed and said “nice try.”

I managed to angle it today so that I had a bit of time to myself…well, with just the baby anyway. She’s like a permanent attachment to the side of my body so I include time with just her as time “alone.”Elsa is at orchestra every day this week and today Jude went to a summer camp based at his school. He hasn’t done one of these for a few years as last time he went (I think he was about 7), I found out he had literally sat and played with cars on a mat ALL day long. No one had attempted to distract him with other activities, they’d just assumed he was happy like that. I was mortified no-one had realised that he’d just gone into himself in a way only autistic and severely disabled children are able to do. But anyway, I thought we’d give it another go so today from 10am-3pm I was Jude-free. Amazing how fast 5 hours can whizz by!

I think he had fun. It’s hard to tell with Jude really as his idea of a good day is one where he has been given a cake or sweets or has been allowed to stare at constant episodes of Topsy and Tim whilst lining up building blocks. In fact, if you ask Jude if he’s had a good day, he’ll automatically say yes. I wasn’t overly confident at pick up time when the lady who went to collect Jude for me said “I think he’s had good day.” Awesome. He’s going back on Friday so we’ll see, I’ll reserve judgement for then. I know there is only so much they can do in terms of budget and content and they do try to theme each day but it just always seems so basic. Am I a summer camp snob?! Perhaps. I won’t deny that one.

So what do I mean when I say Jude “goes into himself?” Have you ever seen someone concentrate on a game of chess so hard that they look like their mind has become its own being and their body is subservient to what is going on? They are focusing so hard that they are no longer looking with their eyes, just looking within their brain to work out that next move. Jude has almost that look when he’s left to his own devices with some building blocks/random objects and a table he can kneel up at, at eye level. He will line up the blocks and move them round in some random manner (random to us but clearly not to Jude.) I don’t know for a fact how long he could do this but when he’s in the right mood I would guess he could do this for at least an hour. It’s as if he needs to do it to feel calm, content and relaxed. Elsa will just lie on the couch and watch tv to chill out, Jude will line up blocks!

It’s called stimming in the world of autism which stands for self-stimulatory behaviour. This web page below gives a good, detailed explanation of what it all means.

Jude didn’t do it when he was younger but definitely over the last few years I have seen a vast increase in his variety of stims as well as his need to do them. Apart from playing with building blocks in his funny little way, Jude also asks the same questions over and over again. I’m not sure if this is a stim but reading up on it, I would suggest it probably is. He seems to have certain sentences and questions for certain people and he’ll ask them as soon as he sees that particular person.

Similarly, he makes noises. Not all the time and actually, they have lessened a great deal to the point where I think Jude now uses them purposefully as a way of getting attention. When he is with certain people, he never makes his noises but with others, it’s almost immediate. Habit like.

I read an article on the BBC website about stimming (http://www.bbc.co.uk/news/blogs-ouch-22771894) and found the following quote from a lady on the autistic spectrum herself, very interesting: “[Stopping stims is] a bit like ‘teaching’ someone who is blind not to feel things in a room to find out where they are because we don’t like them putting their arms and hands out to do so.

“It has a purpose. Stopping it in order to make others feel better seems bizarre to me.”

I feel really bad as I often try and stop Jude from making these noises as to me, they seem bizarre and unnecessary. I guess from Jude’s point of view, he is just trying to make himself feel comfortable. Why do we feel the need to make disabled children something they are not just in order to look like everyone else?

I feel bad now, I promise give him more freedom to feel comfortable.

Nothing much else to report today…still no news from the non-Social Worker so I have emailed him AGAIN and more importantly, I haven’t found a Naturopath as of yet but have asked a few people, who do know people in this industry, for some name suggestions.

I’ll leave you with this picture of Jude with one of his wonderful new sensory toys. He still loves them so much so I am on the look out for things to add to the collection. A x